posted
Can anyone give me feedback on the tests results? Is it necessary to further pursue Lyme? Or am I barking on a wrong tree?
I went through 7 doctors all ruled out Lyme. At the onset of my illness, I had 100mg Doxycycline daily (for acne)for 7 months. Got CFS diagnosis two years later. Initial IGenex western blot:
Now, 3 years later, new tests from Stony Brook: Lyme Disease Serology (Elisa) Negative. Western Blot IgM and IgG both Indeterminate. Co-infections were not tested.
I have been taking large dose of abx for 3 weeks now - they only seem to control my Sinusitis and nothing else happened except yeast. My doctor thinks I may have more of unspecified autoimmune disease. I am to get off abx in another week, replacing with trial anti-malaria and chemotherapy. I am a little nervous about depressing my immune system which wasn't fending off virus like Herpes Simplex until large doses of antiviral.
Guess my case is a little complex. Anyone with similar experience or know anything about it, feedback greatly appreciated!!!
Regards.
Posts: 43 | From New York City | Registered: Feb 2006
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BostonLyme2005
Unregistered
posted
Hi,
check out this thread and see some of the links attached....
Seems like you have some + Lyme Bands!
See an LLMD! If you have to travel to see an LLMD, DO IT!
posted
The one who diagnosed me with CFS 3 years ago is LLMD. He believed that IgM positive meant that I had infection, but low dose 7 months Doxy took care of it. PCR was negative so there was no Lyme.
The one who abandoned more Lyme tests now is also LLMD. Current Ind. results on both IgM and IgG, and negative Elisa, plus some autoimmune results led him to believe that Lyme is less of an issue than autoimmune responses.
Chemo is for autoimmune.
Posts: 43 | From New York City | Registered: Feb 2006
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Thanks for your very helpful thread. Sounds like I might had Bb infection from band reading suggested by two posts there. Never had co-infection tested. Guess my doctors din't consider that as necessary? They are LLMDs who also believe Lyme over-diagnosis out there. My lack of reactions from abx supported their assessment I suppose?
Regards.
Posts: 43 | From New York City | Registered: Feb 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
How much and what kind of antibiotic are you on?
It is also prudent to not ignore your autoimmune issues.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I am on 500mg Ceftin 2x daily, and 800 mg Ketek 1x daily. The first several days they cleared my sinus. Now it's not even doing it that well. Don't feel any difference.
I took my first Plaquenil 200mg yesterday. It gives me headache, dizziness and tight chest...I stopped taking it for now.
Posts: 43 | From New York City | Registered: Feb 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I would wonder about your doctors knowledge in that they haven't tested for co-infections. I recall reading that a large percentage of lyme infected patients have co-infections (I think 66%). If you have them you will need to be treated for them (some say even before lyme) in order to see improvement.
Similar to Lyme Disease, testing can be problematic for co-infections and my understanding is that many LLMD's treat for those based on symptoms as well as testing.
Also, I think that most LLMD's think that lyme disease is actually under-diagnosed rather than over-diagnosed.
Did you get recommendations for these doctor's from the doctor's section of this list? Are they members of ILAD's? http://www.ilads.org/
In any case, I would consider seeing someone who will take the co-infections seriously and who is knowledgeable about them.
I could be wrong but it seems like these doctors are giving up pretty easily. Perhaps someone more experienced than I can comment on that. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I also would investigate the possibility of "co-infections". For me, the co-infection babesiosis turned out to be what was preventing me from getting better. I had ehrlichiosis, too, but it was starting the artimesia and atovaquone, etc, (babesia meds) that caused me to finally start making progress..
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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BostonLyme2005
Unregistered
posted
Hope you are feeling better very soon!
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posted
I PM'd you the names of 3 LLMD's in New York
Posts: 399 | From Texas | Registered: Apr 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
luv, little doubt you have lyme that hasn't been adequately treated. 100mg of doxy won't do squat. This isn't some minor little infection your dealing with.
To see any improvement in symptoms can take several months in some cases, not just a few weeks. Ceftin and ketek are good meds and will help in time. Plaquenil is used to help the other abx penetrate deeper.
I'm guessing you may have babesia as well because of the chest tightness you're experiencing. Plaquenil contains components that would attack the babesia, as would the ketek. Adding the herb artemisinin to the mix would be an effective babesia treatment.
Herxheimer or herx reactions are very common with lyme patients. Essentially, upon taking abx you actually feel worse. This is due to the die-off of bacteria being attcked by the abx. The body labors to rid itself of this bacteria that releases it's toxins upon the abx attacking it.
Most lyme patients feel worse initially on abx, after a period of time things improve. You must find a knowledgeable doctor. Post over in the "Seeking a doctor" forum and someone will send you a Private Message to find a competent doc in your area.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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The first LLMD is a well-known, high-priced doctor who specializes in difficult-to-diagnose illnesses. Local Lyme support group knows him well and said that he's now more LL than before. I stopped seeing him because he focused on treating my GI issues (leaky gut and candida) which was helpful but not the key problems.
The current LLMD was recommended by ILADS. I thought the tests were not exhaustive enough but he didn't want to go down Lyme lane as he doesn't think it's my main problem. I never had autoimmune treated as previous Rheumatologists saw bad blood tests but no obvious soft tissue problems. This LLMD is going to treat me as if I had full-blown Autoimmune.
I've been having higher fevers after one Plaquenil on Friday. Am running a fever of 100.5 right now. Body ached from Sat. on. My LLMD doesn't like the combination of Ketek and Plaquenil, so perhaps it's a result of bad drug reaction? Or is it Herxing?
I used to have very low body tempreture 96+ until about a year ago. Now I wake up with 99+. Low fevers became more noticeable in recent weeks. I am not sure if abx results in low fever.
Any idea if this is typical of Lyme or Autoimmune?
Regards.
Posts: 43 | From New York City | Registered: Feb 2006
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quote:Originally posted by lymex5&counting: Did you say that your 2 LL's think that Lyme is over diagnosed . If so you don't have LLMD's. Also you mention that they ruled out lyme because your PCR was negative ?
That is a 2nd strike against lyme literacy! You clearly have lyme from your positive western blot.
[/QB]
Absolutely right on!! She is also correct about the PCR. If it comes up + then you definitely have Lyme. If it comes up - then you could STILL have it.
It's like dipping into a swimming pool full of ping pong balls. You could easily dip into to it several times and still miss the balls! It wouldn't mean that there weren't any in the pool!
Please find a real LLMD and be sure to read this about the Western Blot.... VERY IMPORTANT!!!
posted
Thanks luvs....! Lymehead here! I usually have these where I can just copy and paste, but I have a new computer and have had to type the links out. I found not one, but TWO mistakes in what I posted! ARRRGGGH!
From what I know about autoimmune, there's no fever involved...??? Sounds like infection to me.
I would make sure to get TREATED for babesia no matter what any test says. Your fever could very likely be from that. It needs different meds.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Fever is now 101.5. Aches and Chills. Not feeling particularly worse off than usual because I've been in it for so long...tough to tell if it's herxing or else? It's all a big blur...wish more in touch with my body.
Fever ran up AFTER taking Plaquenil 200 mg (half the daily dosage) only twice this weekend.
Posts: 43 | From New York City | Registered: Feb 2006
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Thanks for the link! That's a LOT of good info to absorb!
No, I don't have flu. Just burning up. Actually the fever is from abx. Plaquenil lowers fever, contrary to what I thought before.
Posts: 43 | From New York City | Registered: Feb 2006
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JimBoB
Unregistered
posted
Luvs:
Keep looking into the herbs too, like you indicated you want to.
The abx alone does NOT work for the majority of people with Lyme. Only some, and mainly IF it is caught really early, like in a week or two after being bit.
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I usually have these where I can just copy and paste, but I have a new computer and have had to type the links out. I found not one, but TWO mistakes in what I posted! ARRRGGGH! ![[bonk]](graemlins/bonk.gif)
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